The world goes dark, for a time, when the doctor says your baby girl has been diagnosed with cystic fibrosis.

But times are changing.Decades of research and development suddenly began yielding breakthroughs in 2012; and for families touched by the disease, the world is getting brighter.

First, a few grim background facts:Cystic Fibrosis (CF) is a chronic, progressive, and ultimately fatal genetic disease, primarily damaging the respiratory and digestive systems. A diagnosis of CF can be a patient’s, and parent’s, worst nightmare-- CF is indiscriminate, cruel, and, until now, incurable.

But in January 2012, CF got its first well-deserved kick in the crotch by American researchers and the FDA, with the approval of Kalydeco, a medicine proven to control the disease in a subset (4-5%) of CF patients.

What’s significant about this CF crotch-kicking, and the underlying research, is that:

It addresses the root cause of CF, not just the symptoms.

Its reach will extend to a broader subset of CF patients (clinical trials are underway).

It is only the beginning.

In other words, what we’re learning is cracking the armor of this disease, and the CF smackdown has begun. With your help, CF could be almost fully treatable within the decade.

What’s happening in Chattanooga?

Dozens of families in the Chattanooga area are affected by CF.

Chattanooga is fortunate to have one of only 110 accredited CF Centers in the United States, a testament to a dedicated local team helping families from all around the region. This team and many local families have been steadfastly supporting the search for a cure for years. Especially now that there is traction, contributions will make a difference.

Partly of Chattanooga origin, at least one other promising effort is now underway. The collaboration involves scientists from Israel, Birmingham, and Bethesda, and results that could extend to a broader class of CF patients, and even beyond (to muscular dystrophy, spinal muscular atrophy, and more).

How can you help?

Contribute to this cause on Causeway-- the timing is historic, and your donation will be doubled with a match from a local source, up to a $25,000 match. 100% of these funds will pass through to the Cystic Fibrosis Foundation (CFF), with Chattanooga’s name all over it.

Will the money be dissolved in a pool of wasteful bureaucracy and silly admin expenses?

Quite the contrary. First, 100% of your contibution (actually up to 200%, given the match) will go to the CFF to be allocated to the effort. Second, the CFF knows what the hell it’s doing. This isn’t a nonprofit who blows money on junk mail and Sally Struthers campaigns. They invest well, and their proverbial “search for a cure” actually just found one, in 2012, for a significant number of CF patients. The next round is in the pipeline. Third, given the current rate of traction, your contribution will make an actual difference in the lives of children and adults who are battling CF right now.

Bottom line:

Researchers just landed a big ol' haymaker that has knocked cystic fibrosis to its knees, for the first time in history. But while CF is down, it isn't yet out. So join the CF Smackdown today, and let's all pile on together.

Even as you read this, some kids, and adults, are receiving their first dose of a medicine that will essentially neutralize their disease. Amidst a research revolution, you are witnessing the reign of CF coming to an end, and your contribution will help liberate tens of thousands from cystic fibrosis.

On behalf of every single one of those patients, their friends, and their families, thank you sincerely for your help.

What's Currently Being Done

Why

Way

Resources

Money Needed: 50000.00

How We'll Rally Support to Meet Our Needs

This cause offers a 100% match for all donations, up to $25,000 in matching funds.

...and we are trying to establish a potential 100% match from the CFF, which would mean that every dollar donated through this CF Smackdown cause could turn into four dollars. This is not in place yet, but just letting you know we're working on it. In the meantime we still have our own 2:1 match.

Updates

Three Blind Wines

On November 15, local CFF supporters will be hosting Three Blind Wines, an annual wine tasting event benefitting the CFF of Tennessee. Thank you to Alex and Ginger Birnbaum and so many other dedicated volunteers for making it happen! Details here (full URL is https://www.facebook.com/events/509836255695199/)

Results from Three Blind Wines

Update sent from Ginger Birnbaum, local CF parent and catalyst for good in the CF community:

"The Cystic Fibrosis Foundation's 4th Annual Three Blind Wines took place on Thursday, November 15 at The Mill. They welcomed more than 350 guests who participated in a blind wine tasting lead by local wine partners. Mr. Peter Hodge, the father of two daughters with Cystic Fibrosis, spoke candidly about his recent struggles as a CF parent. His awe-inspiring and most passionate speech helped the event raise a record amount, $39,000. Many local CF parents and volunteers worked with local sponsors to make Three Blind Wines 2012 a smashing success!"
Congratulations to Ginger and local supporters of the CF community-- everything you are doing is making a difference.

Kalydeco Named "Most Important New Drug of 2012"

Kalydeco was just named "The Most Important New Drug of 2012" by Forbes Magazine (here), for three main reasons:

It is a genomics breakthrough, directly countering a genetic defect

It was driven, in large part, by the Cystic Fibrosis Foundation, who is absolutely leading patient advocacy groups by example.

It makes money for both the company who invented in it AND the CFF, who was visionary (and brave) enough to make the investment years ago. The royalties from this drug will help fund future treatments-- this is innovation, and dare we say, capitalism, at its best.

NPR's "All Things Considered" put recent cystic fibrosis breakthroughs in historical perspective today (Jan 2, 2013, that is). It's been nearly 25 years since the CF gene was discovered in 1989. We are fortunate to be in a year when patients are just beginning to reap the fruits of that labor. Read or listen to the story here.

62% to our goal!

The Smackdown has raised more than $12,000 so far, including $5000 in matching funds. If we can raise $3,000 more from folks like you, the remaining $5000 match will get us to our goal of $20,000. Add to that, our cause would qualify for the 10% match from Causeway, taking the total to $21,000. If we can do this, we hope to deliver the check in person in March at the National Cystic Fibrosis Volunteer Conference-- certain to make a big splash for Chattanooga, Causeway, and, most important of all, cystic fibrosis research. Thank you, everyone, for helping to make this happen.

Living with CF

This is a video about CF parents and children, made by another group of cystic fibrosis volunteers (in Illinois) that illustrates just a few of the difficulties that CF inflicts on families and children. It also touches on the light at the end of the tunnel-- the cures that have already started coming for a small group of CF patients, and the cures that are coming the the many, many other patients -- with your help -- within the decade.

Good News from a local family's efforts to lay the SmackDown!

Today, we are thrilled to announce that an international research collaboration, one that a local CF Smackdown family helped launch, was just funded by the CF Foundation for two years!

Details are confidential, but the project involves addressing a category of genetic mutations (splice mutations) which, if successful, could help thousands of patients with CF, and potentially other diseases. It may take 10 years for this to bear fruit, but what was merely a “very, very long shot” in the beginning is now “game on”.

This is a great example of how ordinary folks can make a huge difference for CF. Though this example took a whole lot of hustle, this was just a family from Chattanooga deciding it was going to help change things for the better, and then setting out to do so.

With the amount of traction there is in CF research now, any contribution makes a difference, immediately. Consider contributing to the CF Smackdown and join an underdog team who’s starting to rack up some victories.

Congratulations to all-- the recent CFF Great Strides event in Chattanooga was a record-breaker. More than $120,000 raised overall, and the CF Smackdown team (a rookie who came out of nowhere) led the field with nearly $32,000 raised (nearly all from upstart nonprofit Causeway-- thank you, Causeway!). Hundreds of folks turned out, enjoyed music, walked around in circles, and overall, continued to pile on in the fight against cystic fibrosis.

And did you see the sea of capes and lightning bolts? That's the symbol for the Smackdown. Expect to see more where that came from. Join us as we build momentum in a fight that will be won within this decade.

the smackdown launches cf smackdown.com

With your help, the CF Smackdown has already accomplished some amazing things in research, fundraising, and more. Causeway, in its awesomeness, has helped us get started in a way we never could have without them.

While we continue to focus on research, funding, and "special projects", it makes sense for us to have a more robust home on the web.

So today we are announcing the launch of the new CFsmackdown.com, where you will find updates, information, and some cool special projects, including Smackdown Grants.

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I love what u all are doing. My grandson is 6 months old and he has cf it is so hard seeing him fight for his life some times he has had several surgeries all ready we live in morristown tn and we don't have a lot of money but if there is some way we could help u raise money that would be great and I will pray for all of u with cf and there families god bless you all